Proton therapy is coming to the UK, but what does it mean for patients?

Radiotherapy – using radiation to treat tumours – has been a mainstay of cancer care for more than a century. Over the past few decades, it’s changed almost beyond recognition, and has been responsible for saving thousands of lives – around 40 per cent of people who survive cancer do so because of radiotherapy.

The other big thing in the pipeline for the UK is proton beam therapy – a highly-targeted type of radiotherapy that can treat hard-to-reach cancers, such as spinal tumours (chordomas), with a lower risk of damaging the surrounding tissue and causing side effects. At the moment, patients needing this type of radiotherapy are sent for treatment in the US, but the government has now pledged £250 million to build two new NHS proton beam centres.

Before we get too excited about this new treatment, it’s important to point out that it’s thought that only around one per cent of UK cancer patients could be suitable for proton therapy. There’s also a lack of hard conventional evidence to prove that it’s more effective and kinder than conventional radiotherapy.

So it seems like a good time to look in more depth at what the treatment involves, the current situation for UK cancer patients who are suitable for proton therapy, the plans to bring it to our own shores, and the issues, controversies and questions that still remain.

Radiotherapy vs proton therapy – what’s the difference?

Most conventional radiotherapy treatments delivered by large machines – whether it’s the latest stereotactic or image guided technologies or older styles of therapy – all use beams of X-rays to treat tumours. X-rays are high-energy waves made of photons, which are a form of electromagnetic radiation – a type of radiation that covers everything from radio waves and microwaves, through the visible light spectrum we can see, to gamma rays created in nuclear power reactors and out in space.

The electromagnetic spectrum

Radiotherapy works to treat cancer because X-rays damage cancer cells, meaning they can no longer multiply and will die. But the beams don’t discriminate between cancerous and normal tissue, and can cause serious side effects by destroying healthy cells in their path.

Over the past 50 years, advances in technology have meant that doctors can shape radiotherapy ever more precisely to match the shape and size of a patient’s tumour. Some of the latest machines can even track how tumours move as a person breathes, to make sure they’re hitting as little healthy tissue as possible while zapping the cancer.

But no matter how advanced the techniques get, one problem with X-ray radiotherapy remains – once the beams have entered a person’s body, they keep going. Although the radiation beams are focused on a tumour, so the dose to the surrounding tissues is minimised, there will inevitably be some potential damage, leading to short or long-term side effects.

While this is obviously not ideal for cancer patients at any age, it can be particularly harmful for children (especially those being treated for brain tumours) as their bodies are still developing and they’re more susceptible to the effects of radiation. They’re also more at risk of developing a second cancer later in life, caused by their early exposure to radiation. So there’s always the need to strike a balance between delivering a big enough dose of radiotherapy to kill all the cancer cells, while inflicting as little damage as possible on the healthy tissue around them.

One way to avoid these problems is to zap tumours with a beam of protons, rather than X-rays. Protons are positively-charged tiny particles that are found in the centre (nucleus) of every atom in the universe, and they can be generated and focused into beams in a controlled way using large particle accelerators.

Like regular radiotherapy treatment, proton beam therapy damages cancer cells in the same way, so that they die. But unlike X-ray beams, proton beams stop once they hit their target, rather than carrying on through the body (due to a quirk of physics known as the Bragg peak, if you’re interested).

This cuts the chances of damaging the surrounding tissues, reducing side effects – something that’s especially important if you’re dealing with a small child’s developing brain and body. However, it’s important to remember that the treatment isn’t a “magic bullet”, and it won’t be suitable for everyone. And although it looks like proton beam therapy has fewer side effects than conventional radiotherapy, it still carries some risks and uncertainties.

The current situation

At the moment, there are two options for NHS patients whose doctors think they are suitable for proton beam therapy.

Thousands of people have been treated there over the years, and more than eight in 10 of them have kept their sight after treatment. But the proton beams produced in Clatterbridge are relatively low energy, and can only travel around three centimetres into the body. So they can’t be used to treat other types of tumour.

The other alternative – mostly for adults and children with brain tumours – is to head abroad for proton therapy. It’s important to point out that at the moment, there’s a lack of good evidence to show that most people who get proton therapy abroad will do better than those who get conventional treatment here in the UK.

One family’s story

Last year Lucy Thomas, aged seven (right), was diagnosed with a rare type of muscle cancer called rhabdomyosarcoma in her nose and mouth.

After surgery and chemotherapy, she and her whole family travelled to Oklahoma where Lucy had 28 doses of proton beam therapy.

Her mum Caroline says:

“We always knew that Lucy would need radiotherapy as part of her treatment. Our consultant at The Christie Hospital in Manchester explained the difference between standard radiation and proton beam therapy, and the benefits proton therapy for the type of tumour Lucy had and its location.

“When we finally got confirmation that Lucy had been accepted for proton therapy we had just three weeks to prepare and get everything ready for more than two months in America. It wasn’t easy as Lucy was in hospital for most of that time.

“We were fortunate that most of the trip was funded by the NHS, but our family and work colleagues had to help us pay for travel for our son Owen. Whilst we were there we still had all our bills to pay in addition to the cost of living in the US, on top of the stress we were already under caring for Lucy.

“Being away from Royal Manchester Children’s Hospital, where Lucy had her chemotherapy, was also a strain. The Oklahoma centre had different procedures and terminology, which were hard to explain to a six year old who was very poorly.

“It’s fantastic to know that proton beam therapy is finally coming to the UK. It will give more children like Lucy the opportunity to have this form of treatment, as not every family is as fortunate as us to be able to move to America for three months.”

As a result of her treatment, Lucy wants to be a proton beam therapist in the UK and help other children. And although she’s still having regular checkups, things are looking good and she’s enjoying life back at school.

NHS patients like Lucy first started being treated with proton beam therapy overseas in 2008, at a cost of around £90,000 per person. But there can also be extra costs, such as any additional medical treatment, living expenses and accommodation for extra family members or carers, so families often turn to charities or their own fundraising to cover the expenses.

Given the key need to treat some patients, particularly children, within a set time, the extra complexity of transferring care abroad raises new risks and could even affect their outcome. So getting the balance right is complicated, and the NHS system takes all of this into account.

There are also issues with transferring medical data across borders (especially images of scans), as well as arranging visas and travel insurance for patients. But despite these hurdles, since the programme started in 2008 a total of 370 patients have been approved for proton therapy abroad, of whom two thirds are children.

But is it working?

So far it’s difficult to tell, as the numbers of patients affected by any one type of cancer are very small, particularly for very rare childhood tumours. This makes it hard to compare survival with people who’ve been treated in other ways.

The data on adults from the UK treated abroad seem to show that they are doing well after proton therapy, but the patients who get the treatment have been selected for it specifically because their doctors think they have a good chance of doing well from it.

For children, the outcomes seem to be comparable to the standard treatment they would have received in the UK. However, it’s too early to say whether the kids who’ve had proton therapy suffer fewer long term side effects than those who had conventional radiotherapy, which is where the really big benefits could lie (assuming that both treatments are equally effective).

New UK proton therapy centres

In August 2013, the UK government confirmed that £250 million would be made available to build two UK proton therapy centres – one at the Christie Hospital in Manchester, the other at UCL Hospital in London. They’re due to open in 2018, and there’s also an option on the table to have a third facility in Birmingham at some point in the future.

Both facilities will primarily cover English patients, as England’s NHS ‘pot’ is bearing the brunt of the costs, but it’s anticipated that Scottish, Welsh and Northern Irish patients will also be able to use them.

This is a big sum of money for just two treatment centres that are expected to treat around 1,500 patients per year between them – many more people than are currently sent abroad for proton therapy.By way of comparison, the new conventional radiotherapy centre being built at the Beatson Centre in Glasgow seems a snip at just £25 million. Yet the cancer drugs fund – which provides highly expensive drugs, many of which are aimed at prolonging life rather than cure, to around 28,000 patients – costs £200 million per year.

The high costs are due to the fact that these are huge bits of kit. Although a patient will walk into a relatively small room for their treatment, containing a bed within a doughnut-shaped machine, this is just the ‘tip of the iceberg’. Behind that lies an enormous particle accelerator weighing hundreds of tonnes, responsible for generating high-energy proton beams.

However, at around £40,000 per patient, the costs should ultimately work out as cheaper than sending people abroad and are expected to fall over time. What’s more, having facilities in the UK will cut down some of the extra expenses for families and carers. And it should also enable more people to benefit from the treatment.

Importantly, the new proton beam therapy centres are located in two of the UK’s major hubs for cancer research, which are also key care centres for rare adult cancers, as well as children and young adults with cancer. This should help doctors to answer some of the questions that still remain about the effectiveness of the treatment, how best to use it, and who’s most likely to benefit.

Challenges and issues

Many people involved in cancer research and treatment have welcomed the commitment to build these new proton therapy facilities, but there are a number of issues and concerns that have been raised about bringing such expensive technology to the UK.

When making decisions about cancer treatment, it’s important that they should be based on the best scientific evidence available. One problem with proton beam therapy is that it’s often used to treat very rare cancers, where it’s difficult to gather enough data to get meaningful results. As a knock-on effect, this means that relatively few studies have been published, making it hard to judge exactly how effective the treatment is.

Researchers with long memories also remember the saga of neutron beam therapy back in the 70s and 80s. Like protons, neutrons are tiny subatomic particles rather than waves like X-rays. Large amounts of money were invested in equipment and clinical trials, but the results were disappointing and plans for neutron therapy in the UK were shelved.

So there’s understandable caution on the part of some people when it comes to this kind of technology. However the fundamental difference is that protons have very similar biological effects on cancer and normal cells as X-rays, but still have all the advantages of neutrons in terms of better accuracy and a beam that doesn’t go beyond the cancer.

Here in the UK, we’ve made big strides in treating cancer successfully by bringing together doctors, surgeons and radiotherapists into multidisciplinary teams, providing joined-up care for patients throughout their cancer journey. There’s a risk of breaking up individual patients’ care by sending them a long way from home for treatment. And there’s also the issue of providing treatment across the whole of the UK population. Having just two national centres means that some people will find it easier to get there than others, which could lead to inequalities in treatment.

Finally, at least three private healthcare companies have announced plans to build their own proton therapy centres here in the UK, treating NHS and private patients. But it’s not clear how much the NHS would be charged to use the facilities, how decisions might be made on who gets access to therapy, or what the technical specification for the treatment machines would be. This means that the NHS is unlikely to get into bed with the private sector, at least as far as proton beam therapy is concerned.

Who could benefit?

Doctors think that around one per cent of patients treated radiotherapy in the UK could be suitable for proton therapy. This would mostly be children with various types of cancer including brain tumours, as well as adults with brain tumours, head and neck cancers, spinal tumours and sarcomas. In addition, people with more common types of cancers in tricky locations of the body that would be difficult to treat with conventional radiotherapy might also benefit.

As the UK’s proton therapy centres come to fruition over the next five years, there’s still a vital need to continue gathering and analysing research data from patients receiving the treatment around the world, so doctors can figure out the most suitable candidates for treatment and the best way to use it.

Overall, we’re very happy to hear that the government is investing in cutting-edge techniques like proton therapy – although, of course, this shouldn’t be at the expense of conventional radiotherapy, which still saves thousands of lives.

With the right investment in technology and people, the UK’s radiotherapy services could be among the best in the world. We will continue to keep pushing the government to make sure this happens and even more lives can be saved.

More on this topic

Tags

Comments

We have just returned from our ‘radiation vacation’ in Jacksonville, Florida, where our 5 year old son just had his Proton Therapy for a brain tumour. If you are interested on what life was like during this time, check out our blog at http://www.jumpersforjoel.blogspot.com

I moved to France in Aug 1011. In April 2013, not yet having transferred to the French health care system I found a breast lump. I contacted a doctor, who matched me off for a mammogram, enlisted me in the system. He phoned the hospital there and then and booked me in with an oncologist., A PET/TEP scan found I also had a tumour on my spine. I was referred to Tours and consultation and 3 treatment sessions on the Cyberknife were completed within three weeks.
All sorted and fixed before I had my breast cancer surgery on October! Am I lucky to be here in France and not in the poor underfunded UK NHS system – you bet I am !

my son who was 5 years old was lucky enough to be chosen to be sent to Jacksonville,florida for treatment because there was no proton therapy to be had in europe (unless your cancer was eye related ) and im glad to say that its cured him with a lot less damage to the surrounding tissue than radiotherapy could do and to answer the question that people fare better with proton because maybe the doctors have chosen them is unbiased i know but also very untrue some patients just wouldnt survive traveling to america nor the treatment once they arrived but some wouldnt get the chance because of age or condition which isnt fair either but as was mentioned it isnt the magic bullet because of the treatment my son is disabled (as it still causes damage) but during his illness we just wished the cancer gone at the cost of all problems that may arrive through treatment and it worked but before you get your hopes up for it working for deep body tissue cancer it doesnt work that way. its aggressive and powerful which is why cancer cell are obliterated by it but normal cells which are caught in the cross fire are also destroyed as well which means it has to be used sparingly and casts have to be made to protect body parts its aimed at to protect the healthy cells .but all in all i dont know why its taken so long for the uk and europe to catch up and utilise these amazing machines (i know cost but you look at an ill child in one of the uk’s sick childrens hospitals and money means nothing )

A very informative article, i would like to address the issue, regarding the effectiveness of Proton beam therapy treating Prostrate cancer, myself being a patient with Pca, 3+4 psa 7.8 being assessed @ ULCH in London. was hoping to be included on the ‘Nanknife’ trial, but have been offered Focal Cryotherapy,
THe site YANA for prostrate has many HUNDREDS of men who have been treated with PROTON BEAM THERAPY over the past years i think as early as 2007-8 with very remarkable success rates, and extremely low occurrences of any Side effects.
I for one sufferer would like to have the choice of PROTON beam therapy and would almost likely to consider it, instead of what I’ve been offered, FOCAL CRYOTHERAPY, i am fortunate that i am being treated at a hospital of excellence, but i do think PROTON beam has a positive role to play against the fight with PROSTRATE CANCER..

i think its very interesting at themoment iam on a trial drug ive had a kidney removed due to cancer but ive got a small piece of cancer in my chest not my lungs but behind my rib cage would the proton treatment be of any benefit to me?

Adam – Light:
Light was developed by the team at CERN. Now purchased by AdvancedOncotherapy with an agreement from BMI Healthcare UK, Britains largest private hospital group – to build private proton therapy facilities in the UK using this new, cheaper, and more compact proton therapy machine.http://advancedprotonsolutions.com/home

Ion Beam Applications (IBA) – Proteus One:
IBA has the most installed proton machines in the world and has now developed a compact, cheaper solution that will be ready for clinical use in 2014.http://www.iba-protontherapy.com/proteusone-0

P-Cure – P‐ART:
P-Cure, an Israel-based company, is also developing a cheaper and more compact solution.http://www.p-cure.com/

MEVION S250:
The Mevion S250 Proton Therapy System is USFDA 510(k) cleared and complies with MDD/CE requirements. It uses a TriNiobium Tin (Nb3Sn) core that reduces the size, cost and complexity of proton radiotherapy delivery.http://www.mevion.com/the-system

European PROPULSE project, coordinated by the Applied Optics Laboratory, are pursuing similar goals. “A laser that can generate the required ion energies for deep-seated tumors while fitting into a CT room could be developed within 10 years, and may ultimately be priced at around €10 million,” explains Julien Fuchs, one of the leading physicists working on the project

Lioness Light Ions:
LIONESS is changing this with a compact, cost-effective and flexible set of tools for light ions research.http://www.lightions.com/

Hitachi:
Hokkaido University and Hitachi Ltd. have started joint development of the Gated Spot Scanning Proton Therapy with Real-Time Tumor-Tracking System by integrating real-time tumor tracking technology (RTRT) and the proton therapy system dedicated to discrete spot scanning techniques under the “Funding Program for World-Leading Innovative R&D on Science and Technology (FIRST Program)”.

P-Cure – P‐ART:
P-Cure, an Israel-based company, is also developing a cheaper and more compact solution.http://www.p-cure.com/

If you think proton therapy is limited to only 1% of cancer patients, why are so many companies working to create cheaper proton therapy solutions – All of the companies listed here are developing cheaper proton therapy solutions right now. The cost of the technology is becoming cheaper, and proton radiotherapy will absolutely replace conventional radiotherapy. This is indeed only a question of cost. Proton therapy is safer, more effective and superior to conventional radiotherapy. It is a non-invasive cancer treatment modality that cancer sufferers deserve.

Hello Arthur, I am not claiming, I am only repeating the words of doctors and physicists who have proven that the majority of a proton dose is deposited within the tumour.
Why else would the government spend so much money on this?

Protons are already the treatment of choice for several tumours primarily because they reduce the risk of unwanted side effects and reduce the risk of secondary cancers. This is due to the more precise dose distribution of a proton beam. An X-ray will ALWAYS deposit more of its dose before and behind the tumour.

John, You claim that protons deposit the majority of their dose in the tumour. Well so do megavoltage x-rays when deployed using modern techniques such as intensity modulated radiation therapy. I am not aware of any scientific studies that show proton therapy to be more effective at curing cancer than conventional radiotherapy. From my reading of the literature most of the scientific evidence to date seems to point to a remarkable similarity in terms both of cure rates and of unwanted side effects.

I believe that all cancer treatments should be available to both NHS sector and private sector, maybe they could ‘part fund’ the NHS application for treatments to be widely available across the UK, using satellite centres so that people will have a shorter journey time to receive the Proton therapy. I have sat in on discussion forums at Welwyn Garden City regarding cancer satellite centres a few years ago when I represented my village – one main outcome of the meeting; ‘patient’s journey time must be kept to a minimum’. If the private hospitals that have started to use this treatment possibly work together in finding ways of assisting the NHS with funding, even better – if external sponsorship was found this would be wonderful for all cancer patients and their families. This new treatment sounds exciting, I hope that the Government will help with part funding as the UK have so many fantastic research centres of excellence and always need money to keep doing their own research too which is so important for everyone worldwide. Cancer Research UK is doing a brilliant job in raising awareness, the supporters are just amazing, nineteen months of working in a Cancer Research UK shop has taught me so much about the courage of so many families, an experience I will value for the rest of my life.

I found this article very helpful in providing a balanced view of the potential benefits of proton therapy. It might be worth adding that although proton radiation dose distributions have the advantage of the Bragg peak in the forward direction, there remains unwanted lower level radiation in the lateral directions as well as unwanted radiation up to the Bragg peak in the forward direction. Also very few tumours can be treated solely from one direction. Proton therapy machines are extremely expensive both to purchase and to maintain. It might be argued that this money would be better spent on advanced conventional radiotherapy equipment where many more patients could be treated thereby saving many more lives. The small number of patients that might benefit from proton therapy could still be treated overseas as at present. After all if a patient happens to live in Aberdeen or Penzance, they are unlikely to gain much from travelling to London or Manchester compared with travelling to Florida.

Follow us

Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666) and the Isle of Man (1103). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: Angel Building, 407 St John Street, London EC1V 4AD.